Hello everyone,
I’m 33, diagnosed with the wild ride that is Hypersensitive Pneumonitis January 2021 after over a year of inconclusive tests and my body keeping everyone guessing. My case is quite severe but I’m living well with it.
I don’t know anyone else with the condition or anyone around my age with a lung condition. Would like to touch base with anyone who may be experiencing similar?
Hello, and welcome to the forum. Hoping someone who can connect with you will be along soon. Good to hear you’re living well with Hypersensitivity Pneumonitis and I wish you well. Xxx
Thank you 
Well i'm learning to live well with it, and giving it a good go! Would be lovely to connect with anyone. Thank you for being so welcoming x
Hi there,
I also have chronic hypersensitivity pneumonitis, finally diagnosed in 2022 after much misdiagnosis. My allergen has never been found. Happy to chat xx
Hi, same regarding misdiagnosis. Nobody could work out why I was unwell as displayed no respiratory symptoms until I suddenly started to become breathless. One CT scan later and everything changed. We ‘think’ we may have just found my allergen, currently in the process of it being investigated. How are you doing with everything? Thank you for reaching out! X
Hi, I also live with hypersensitive pneumonitis as part of my diagnosis which I have to say has changed over the years. I was finally diagnosed 10years ago after a year of tests. It’s a steep learning curve of what you are able to do. My advice is try and do everything you would normally do just at a much slower pace. There are 3 parts to what I have and unfortunately I have all 3. I’m on oxygen 24/7 and have been since 05/12/12. I’ve surprised all the consultants by doing aswell as I have. Try and keep positive it definitely helps. Once you’re on the right meds hopefully you can live your best life. Keep your chin up enjoy the sun I find this helps loads and keep moving forward. By the way I was 41 when I became ill. We’ve never found the cause of of my illness. Good luck x
Thank you Wendy <3 I’m still very active, I’m insane enough to have 3 border collies. I’m hovering at around 48.5% lung function and 1.8litre lung capacity but can generally maintain really good oxygen levels which surprised everyone, but my heart seems to work overtime to help that happen. They’re just querying whether my co2 is messing around. Starting to find my feet with it all and whilst I’m not 100%, now I’m on treatment I am a lot better. I became very very unwell before diagnosis. It’s incredible to hear your story. It’s very reassuring thank you for sharing! I am also surprising the medical team and nobody really knows what to do with me. As long as I can live well I’m happy and thankful my team are very supportive of that. Ironically I work in the nhs. We had no idea what my cause was until I flared up a few weeks ago and now we have a theory that is being investigated. Hopefully my theory is right because it will be easy to avoid to an extent. I’m about to start pulmonary rehab, but the nature of our disease I have to be in a group that may be emotionally distressing. However my medical team have kept me informed and said I can pull out at any time and they will rethink. I do love the sun and being outdoors! 🥹 thank you, it’s been a bit lonely the last year as I hadn’t met anyone else. Thank you for such a kind, positive and helpful message x
my lung function tends to fluctuate unfortunately between 28-35% whilst in a stable phase I feel quite well, I’m naughty at times and don’t have my oxygen high enough when I’m walking around in my home. Like me you are probably having regular blood test due to the medication. I had 1 dodgy result so had my meds changed unfortunately I couldn’t get on with the new ones so fought for nearly 2 years to return to the original medication and fingers crossed I’ve stabilised again. Your oxygen levels will definitely have an effect on your heart. When my oxygen drops my heart will race trying to compensate so definitely get that checked out. I did pulmonary rehab last year and didn’t find it any use to me at all. I can’t physically walk or exercise how they wanted me to, it was nothing like I was expecting. I thought I would be doing breathing exercises and it was like going to a gym and doing a weight session. Hope it works for you though. Good luck. Keep your chin up and smile x
hi wendy, I’ve dropped to 48.5% but can maintain 95-100% sats rate independently on average. I don’t have prescribed oxygen at the moment. Yes I have regular blood tests, actually heading off shortly to have it done. My first medication was having no affect so I was swapped and seem to be getting on okay with no side effects. We’ve agreed as well that the meds wouldn’t have as much chance if I’m constantly interacting with my allergen. So hopefully now I see increasing benefit. I’m A physio tech myself so was in a privileged position of already knowing breathing exercises and then had support with this from a physio at a living well clinic. I do Pilates to stretch and strengthen, have found it’s helped regulate my breathing and keep the muscles strong around my lungs to support. I’m extremely lucky and privileged that I can remain fairly active now I’m diagnosed. I just can’t run. But I have built my exercise back up gently and continue to do so. As well as mY mental health and mindset with it all. I am aware I’m in a lucky position with it all and take none of it for granted. It’s my job to build exercise tolerance in unwell adults so I’ve managed to apply that to myself also. I’m sorry to hear PR classes didn’t help you. They do tend to include more than breathwork to strengthen the body and can be a slow and tough process to go through. It’s a balance of putting stress on your pulmonary system without making you overly unwell. It’s a difficult balance to find and isn’t for everyone. Yes naturally dropped oxygen rate will affect the whole physiological system, my heart seems to be compensating. I had a full cardiac check before I was diagnosed due to that being the first indicator. My heart is thankfully very healthy, it just works harder. So il always try to take care of it as well as I can. Having dodgy lungs is bad enough without that going to 😂😅Thank you so much for sharing your story. I’m happy to hear youve stabilised again! I hope you can enjoy your life within your boundaries 😊
I first went to drs in July 2019 feeling breathless after a chest infection. Said it was late onset asthma at 50! Had usual inhalers, but kept deteriorating. Had inconclusive chest X-rays, blood tests etc. Was referred to respiratory team at local hospital, but then covid hit and clinics obviously all cancelled. By Feb 2021 was very poorly, breathing so bad placed on 2 week lung cancer pathway and finally seen in hospital for Ct scans, lung function tests and a bronchoscopy. Hypersensitivity pneumonitis was then mentioned for first time. Referred to severe asthma clinic at Addenbrooks Hospital, saw an amazing doctor who sent me to Papworth, where I still receive care from.
Now take 2.5g of Mycophenolate mofetil a day to try and suppress my immune system and regular steroids. Unfortunately lungs still worsening at the moment. I was a primary school teacher, but can no longer do this, so currently applying for ill health retirement.
Hope they identify your allergen, as it will make the world of difference xx
Aw addenbrookes! I used to live near Peterborough! Wasn’t a bronchoscopy a joy! 😅I moved back to Wales 3 weeks before covid hit. I work for the NHS so worked covid. Had been ‘unwell’ for a while but didn’t point to anything. Became very breathless during working and couldn’t walk up a flight of stairs without feeling like I would pass out. A Dr listened and sent me for a CT and then basically shit hit the fan. A year of tests and no conclusive results, I consented to a surgical biopsy in oct’21 and finally had some answers!
I’m on 2.0g of mycophenolate mofetil, and still on steroids after infections at Xmas. Lungs have been worsening for me too, but it seems like I’ve been around low levels of my allergen on a regular basis. I’m hoping being away from the environment I can hold steady or improve. I’m so sorry to hear you’re deteriorating, I’m always here if you want to have a chat, moan or vent! It’s crap isn’t it and incredibly frustrating. I hope all goes well with ill health retirement. I can imagine, stepping away from your career is upsetting. Before ‘allergen gate’ we were discussing those options for me too. You’re whole life changes at diagnosis doesn’t it, I was clinging on to my job as it was the only constant but now I may have to give that up as my allergen ironically is in my workplace. Feels like life is changing again without choice. I can imagine it’s all felt very unfair.
I keep positive and I’m stubborn but it is all just a bit crap isn’t it 😅
I have 1 consultant who keeps me grounded and realistic, 1 who is me positive and 1 who is a happy medium. Helpful balance. The 1 who is a happy medium is new to the team and so far I love her. She’s very thorough and keeps me updated in between appointments so it’s not so overwhelming. A truly great consultant and welcome addition.
Hopefully we have found the allergen. I’ve been away from it for around 6-8 weeks now while they research, and am feeling a lot better with significantly less hypoxia episodes. Another few weeks to go before retesting and decision day.
Have you met anyone local who has HP? X
Hi Billy, I couldn’t get on with mycophenolate it gave me terrible headaches and I felt really low and depressed on it not at all like myself. I’m currently on azithyoprin and azithromycin which are fab, another good one is clarythamicin. It might be worth asking your consultant if it’s worth trying you on one of these. It also depends on what strength steroids your on. Good luck hope you start to stabilise soon. X
Thank you. Really hope you keep improving. It is a crap illness, literally never gave breathing a second thought until couldn't do it anymore!! Stairs are a killer!
Now I’m under Papworth, finally feel like I’m getting somewhere and my gp surgery understand what’s happening a bit better.
Waiting to start pulmonary rehab, so might meet local people then, but no, don’t know anyone who has HP.
I am very stubborn, probably to my detriment, but determined to keep going! Not ready to give up yet, so if I can’t work, going to enjoy being free just at my pace! 🙂
😂 such a crap illness isn’t it. I have to laugh or id cry. No I never did either, not breathing is such a huge focus!
I’m waiting to start to. I’ve been having a lot of physio and I’m a clinical Pilates teacher too, which I’ve found is very good. I don’t know about you but I get awful tension and pain around my ribs and back. Stretching seems to help. I started swim coaching as well, surprisingly breathing under water appears easier which the hospital is flabbergasted at 😂
👋🏼 well hello new HP friend. I think we are quite a rare breed.
We sound very alike. Exactly, ill health retirement may mean you can lots of amazing paced adventures without the stress of trying to get through a work day. I always used to wake up and think ‘I’ve just got to get through today and then I can go back to bed’ x
Hello to you too! No one has ever heard of HP! I do get bored explaining what it means!
Been ticking off bucket list trips whilst I can still travel, New York next! Amazingly I seem to able to breathe better overseas in general, so think my allergen is UK based!!
Definitely feel that same back/chest/rib pain and find stretching gives some relief.
Just about to get a new dog too, after lost our one in January to keep active!
Onwards and upwards!
😂how do you even start to explain! It’s wild isn’t it. I particularly LOVE the ‘oh so did you smoke’ comment 😑
Oh wow that’s incredible! Where else have you been? Now I’m feeling a little more confident with things I want to start travelling.
I’m so sorry to hear you lost your dog, I have 3 so know how gutted I would be. Very excited for your new addition though!
Every appointment too…”Have you ever smoked?” Err no!!
Just back from Iceland, which was incredible. Air was amazing. Trying a cruise around Scandinavia too, figured it’s an easy way to travel and see places.
He was an ancient Jack Russell, so did well, but can’t live in a dog free house! A rescue jackapoo is incoming!
Hi LungNRestless and welcome to the site. I can't advise as I don't have this but am sure there are plenty who do that can put you on the right track. Its a bit hard on you being so young but am sure you will adapt. Hope you get on the right treatment and get your life back x
Hi and welcome LungNRestless. You have had some informative replies. Sorry I can’t advise but wish you well 🤗
Welcome and best wishes. I'm glad you've found this very friendly site.
Welcome to the forum x
It's a shame you've got pneumonitis, I have that condition too , and I manage to live with it , it's been 6 years since I was diagnosed but that took years. I am 70 now but you should be a priority for help as you're so young. Best wishes
hiya I’m 42 just see on my notes it said non fibroctic hypersensitivity pneumonitis to be honest I feel sick and I’m scared of what happens next ? I read it minimal in both lungs but consultant mentioned before he said I’ve had for a while , all I had was a cough and oxygen drops when moving but goes back up when sitting
hey lovely, I’ve been diagnosed 2 years now 😊I’m living really well and mine is a severe case so please don’t despair to much! I’m also friend with someone who is more progressed than me and doing really well to. The support of a great respiratory team is worth its weight in gold. I’ve also just done a pulmonary rehab programme which had further benefitted me. Some individuals never need to be on meds as it’s a minimal case and they identify the allergen and remove contact with it. It is a serious condition and can have its shitty moments but you can live well with it. Feel free to drop me a dm if you would like to chat!
thank u , I’ll dm u x
However mine is fibrotic so I may only be able to advise so much 😊
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